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  1. Hey, We're staying on the Canadian side of things. At an indoor water park hotel system, like Great Wolf, but not Great Wolf. I'm going to have to stop in a grocery store as well b/c we are planning on breakfast and lunch in our hotel room. I'm not sure if anything will be disallowed crossing the border.
  2. Thanks. I'll come back when I know where we are staying.
  3. Hmmm, I guess I should have mentioned we don't do a ton of dairy products. And the baby can't have any. I have the Celiacs who also are intolerant to oats. Beside even gluten-free oats should not be given to a Celiac child who is DQ2. The DQ2 gene group has the mark of oat reaction. It isn't the gluten protein cross contamination, it is actually an antibody reaction to the oat protein. Check it out in Pub Med or other medical research site. I guess I'm in this rut b/c of the other limitations.
  4. I'm in a food rut. My kids are eating way too many Enviro Kids Cereal bars, it will get old soon and then they won't want them ever again, ever. I have a toddler w/o many teeth who is Celiac. He can't eat apples, carrots, or other hard foods. He has trouble with stringy, like oranges. I'm in a rut about what to feed him. School is out and I now have to prepare 3 meals and snacks a day for 5. I haven't got a clue how to keep it interesting. gluten-free cereal and eggs get old after a while. gluten-free Mac & Ch after 2 days is enough for me. Sandwiches are difficult due to the bread issue. I either have to get up off my duff and make some or go drive 110 miles round trip to buy some! I ran out this week. I'm so bored with dinner!!! I should be making dinner right now and I'm not. The kids are easy they want mashed potatos, green beans and chicken. I'm like ugh. My time is very limited in the kitchen. I don't want to be in there for hours baking and cooking. HELP E
  5. HI We're traveling to Niagara Falls in a few weeks. Any suggestions on safe and friendly places to eat? I so hate being told they won't serve us! It's like the liability policy have arrived and every restaurant out there is rude now. I just want a salad without bread crumbs or onion rings and you can't just take them off. Anyway, the its a PITA to eat out, but we do it on road trips. I wonder if we will come into problems crossing over into Canada with our van full of gluten-free foods for the trip there and back home. I hope not. E
  6. I've been ironically doing accounting from home for years. I am no longer due to my #1 client closing their business this past year and I have 4 kids 3 not even in school. I figure I need to clean it up for tax purposes. I have a 4 yr old computer I'm depreciating HY. And I have a cellular phone that broke which has a SL depreciation of 10 yrs. How do I handle these "assets"? They were personally mine, I moved them to business use at FMV at the time under 50% or more and 50% or less business use and now I need to give them back to me without a huge headache of IRS papers. The FMV of the phone is 0. The FMV of the computer can't be much at all. I know how to do sale of assets, abandonment of assests but these topics really do not fit properly. This is one of those tings that just isn't clearly findable in searching through tax literature. UGH. I'm stuck and I don't even have box! LOL Hey, I used to work for H&R Block in college...
  7. Very few medical doctors are testing IgG reactions. Most of what you are describing are gut issues and IgG would be were to go looking. An Allergist is going to run IgE test, the results come back on a scale of anaphylaxis. Given your dh has allergies to foods, your child very well might come positive on something. You should call and ask specifics before deciding to wait it out. I have read of doctors doing IgG test, but I have not met one. You should know that tests for allergies and Celiac tests are not all that accurate and less accurate in children under age 4. You definitely need answers. But I don't know if you are going to get firm concrete answers ever. The medical doctors could say nothing is wrong with him and then you are left to either try alternatives for testing or try an elimination diet and just go with your gut. Alternatives --- Entrolab - Celiac and Gluten Sensitivity testing Immunolab - food sensitivity testing Applied Kinesiology - chiropractic method of determining food intolerances and environmental sensitivities and body areas affected. And while it sounds hoaky, I had a chiropractor properly identify my thyroid dysfunction and hormone imbalance without taking a history and without knowing I had labs to prove what he did with his muscle testing. It's a long story.
  8. The IgA deficiency is a tricky thing. Let me try and explain from my experience. Mayo Clinic results were "normal" for IgA and our pedi only requested the TTG test w total serum. Mayo only uses one lab range for IgA screening, my son's TTG was negative. I went to a Pedi GI and he retested with Prometheus Labs. IgA total serum was not normal, but not techincally deficient. The lab values by Prometheus are by age ranges, so it was able to work better for a small child. The Pedi GI would not see that the IgA was low and therefore we had likely false negatives. So, I took these results to Dr. Fasano, the "authority". He confirmed my suspicions that the Total Serum IgA levels were not techincally deficient, however, they were so low they could not have given a positive reading for TTG IgA and the other 2 tests that work off of the IgA anitbody set. My ds2 is IgG possitive and gene positive, with "low" IgA. Frankly, it was enough for me. And off the record Dr Fasano agreed the gluten-free diet was proof enough. By the time I got to Dr. F he'd been gluten-free for just shy of 6 months and had remarkable grown and weight gain despite his lack of appetite and adversion to food. I opted not to do Entrolab tests for my other children b/c I had no way of knowing if they were too IgA deficient (or low). I think 10% of the Celiac population is IgA deficient.
  9. Belinda, Those photos are some of the most strikingly Celiac I've ever seen. Oh, poor baby! FWIW - I went through my photos and just could not find a really good one. I will describe -- underweight, shorter than sibling and peers, ribs petruding, no real budda belly, sunken eyes, once we shaved his head at age 3 it was very disturbing, it made it more evident that his face was very thin and the eyes were just not glowing with health. The real tell tail photo I can not find, it is of him at age 3 and his sister age 18mo old in the bath tub. He looks smaller than her, although he really wasn't. She had puggy arms, full face, no ribs, 'healthy' and he was scrawny and looked sick, like a Tom Hanks in the movie he plays a gay lawyer dying of aids. It was also around this time him age 3, her 18 mo old that people thought they were twins, especially in the double shopping carts at Costco. Even today, 2 yrs gluten-free, and 23 months apart they weigh exactly the same, although he is a bit taller. Now, his oldest brother is skinny, my dh is skinny, neither of them have butts, so it really was not odd to be so skinny and be one of my children. It was just a very sickly look in his face that caught my attention in the bathtub photo, it is a haunting photo I can see in my mind. I knew he was sick, I was forever persuing until I hit too many brick walls and give up looking for a spell and then persue it again, 3 1/2 years I was searching until I finally found a doc to really take a close look. The scarist lab result we have is his Creatinine levels -- he was wasting away before our eyes. He has some heart damage which I believe to be from muscle wasting. I firmly believe he would not be here today if we had not gotten answers when we did. Go w your gut. If he is sick and medical care is not an option, try the gluten free diet. If he is really sick, my newly dx Celiacs don't tolerate dairy either, so gluten-free and DF or Casein Free would be the way to go.
  10. The Lundberg Farms Hot Rice Cereal is a bit textury for babies. I tried it on my LO. He never has gotten used to the texture, maybe now that he is 1, I'll try again. Dr. Fasano's Pediatric Fellow (can't remember her name) told me Beech Nut was safe. I used Beech Nut. I called Gerber and the woman I was tranfered to on allergens told me it was manufactured in a completely different facility and not open to Cross Contamination issues -- good b/c preflavored apple or banana rice cereal was "easy" and I need all the ease I can get. The more people who call and ask the better the future will be. They can note that many want to know and might start labeling the boxes. Who knows... Always call for yourself, especially when it comes to babies and their foods. My older kids I'll take the risk and trust another mom. But I say call b/c some areas of the US might have different manufacturing processes.
  11. La Leche League's book The Womanly Art of Breastfeeding talks about food introductions and the hows. Remember any doc probably has only had 1 hour of nutrition in all of his/her years in med school - ignor them. Now since you are Celiac, there is a 50/50 shot your kid is too (unless possibly the dad also has the gene at which point the odds go up). A reaction to oats is a good indication not to do barley. I am with holding gluten until my youngest child is 2 or 3 or 4 have not decided. I don't need the blessing of my pedi to do it, I don't care what they think and frankly what I feed the babe has not come up -- don't ask, don't tell... Of course, I have a few kids, so I guess they don't feel the "need" to discuss diet. Interestingly, if you are a new mom you probably get those ads from formula companies in the mail. I took the time to read the Nestle Good Start one around the time they talk about solids. Do you know it said to not give wheat to any child under 1? I was in shock, but a happy shock -- yeah, someone gets it. Gerber foods have not apparently come to this conclusion w all the wheat in their products for little ones. Despite a mom's short comings in blood work, the body is going to take all your nutrients and put them in the bm for the baby first, hence your levels may be low from celiac disease or simply not getting enough to cover the both of you. I would not worry about the nutrient content of bm so long as your baby is growing and meeting milestones, etc. I would increase my own supplements. Now back to food introduction... My 2nd child bfing reacted to gluten in my diet, I didn't know it at the time. He reacted to every food we attempted to give him due to the damaging affects of my bm (cry now more, no tears left on the subject). My friend a LLL Leader finally suggested meat. And you know what, it worked. I gave him flicks of meat off our plain meat. Later I did go back to veggies and fruits, he never has liked bananas one of the worse offenders to his behind. As for "cereal" it is over rated. It is a "filler" at best. I had a child who was FTT and I used the cereal mode to give him more calories by adding in medical grade amino acid formula and digestive aids. I bought the Earth's Best brand b/c it's iron type is less binding. I also bought Luden (that rice brand) hot rice cereal, it was a bit too grainy for early feedings but now it's fine. As a mom of a few kids, I just did not have the time to home make mush. Tip: A little stage 1 jar of prunes is helpful in unbinding the behind. FYI - Beech Nut labels all their foods really well for allergens, including gluten. Some of their stage 2 'meals' are gluten-free and they use rice pasta in them instead of wheat like Gerber. A pediatric fellow w Dr. Fasano told me to use Beech Nut foods at an appt w my littlest, she was very helpful. I take cues from my kids when ever possible, babies are smarter than many give them credit for. My LO is pushing dairy away after vomitting a few times this weekend. I was hoping it was a virus, but w him pushing milk away, I'm going to say he knows it makes him hurt. Just watch their reactions to foods, take it slow, and certainly if he is hungry feed him.
  12. Definitely stay glutened up a lot. Children heal so quickly that any slack could result in less villi atrophy and then a negative biopsy. Have you considered driving to a different Pedi GI that can get you in more quickly? We drove to Baltimore to Dr. Fasano. I would not say he is the best though, the number of biopsy samples taken was too little, they only took 4, I understand they should have taken at mininum twice that amount. That is aweful to have to wait that long. I would be on the phone trying every angle I could, even going out of state.
  13. I could have written that !!!! I know that look of disappointment, with the look of I'm not going to cry behind it. It breaks my heart. I try not to have something glutenous for a treat for the other kids unless I have an equal for those in the house who are gluten-free. I generally have a few snacks and treats in my bag at all times, I have forgotten on occassion. I try to have things that are special to him that he really likes (gluten-free chocolate covered waffer cookies are special just for him) other things include gluten-free pretzels they are the easiet to transport without breakage or melting, M&Ms, fruit snacks, crackers and nonparishable pudding cups or peach cups. Now if only I could get my mother to not bring something for the non Celiac children b/c frankly I'm just not into wheat and sugar anymore for any body.
  14. The scoping is not the difficult part, this is very true. It is obtaining the biopsies and preparing the slides correctly and then having knowlegdable pathologist looking at them and a Celiac Specialist doctor reviewing them himself. My thoughts are if a Celiac Research center is nearby, within driving distance, then go there. Around here it's the University of Maryland Center for Celiac headed by Dr. Alessio Fasano a world reknown researcher of Pediatric Celiac Disease. He reads the slides himself before giving results to patients from what I understand. He is also training fellows what to look for, engaging them in research, etc. Frankly, the testing methods are mediocre at best. Testing research needs to be done and I know some places are doing that. Anyway, I choose to take my children to the best guy around, it does mean a few hours in a car there and back. I believe Columbia is home to Dr. Peter Green and the Celiac Disease Center at Columbia University. If one of the best is in your own "back yard" so to speak, why settle for 2nd best??? Dr. Peter Green is the author of Celiac Disease A Hidden Epidemic and his research is equally cutting edge as Dr. Fasano. If I lived near Columbia and not UMD, I'd drive to Columbia. You never know when your case might be used for advancements in Celiac Disease study. Since my older child has Celiac, we became involved in a study involving our infant child. UMD is doing a study on the introduction of solids and the on set of Celiac Disease in those with confirmed first degree family members. http://www.celiaccenter.org/research.asp Celiac is farely simple as far as conditions go, usually, but the tests are not accurate and lack definative results, as in negative may not be really negative. And young children present a group where testing is seriously lacking in accuracy - so have it done by the best you can.
  15. Have you ever heard of the Carbohydrate Specific Diet? I would start there. The gut needs to be healed to be well. The Maker's Diet is an interesting read, not sure if I buy it all, but it is good if you have the disipline to give up everything and try dirt to feel well. I think it worked for him, may or may not work for someone else.
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